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There’s still a lack of investment in palliative care research, according to a new report from the Institute of Medicine (IOM). The panel notes that from 2006 to 2010, only a fraction of 1% of the National Institutes of Health grants were about palliative care.
Also, says the report, “Pediatric-related research needs may be especially pressing,” and those needs include comparative effectiveness studies on symptom management and bereavement support; analyses of care in various settings; and studies on staffing, managing, and financing “hospital-based pediatric palliative and community-based pediatric hospice services.”
The report was put together by a panel of 21 experts from academic centers and from government and the private sector.
The committee recommended that professional societies and other organizations “develop standards for clinician-patient communication and advance care planning that are measurable, actionable, and evidence based.” Just as importantly, it said payers should tie those standards to reimbursement.
Among other things, those standards should encourage the opportunity for everyone, including children who can do so, to participate in their healthcare decisions, including decisions as they approach death, according to the IOM panel.
The panel also called for better palliative care training and “a major reorientation of restructuring of Medicare, Medicaid, and other healthcare delivery programs.” Current incentives and the lack of appropriate alternatives “drive a reliance on the riskiest and most costly care settings,” it stated.
Although about 45,000 people aged 19 years and younger die in the United States every year, it’s difficult to estimate the number for whom palliative care would be useful, the IOM panel noted. For one thing, in children death often comes quickly, leaving little time for such care. Trauma and other external causes are still the largest causes of child and young adult mortality. Many other child deaths, including many of those from serious infections and extreme prematurity, are unexpected.
However, a third of pediatric deaths are in children who have “complex chronic conditions,” defined as “conditions likely to last 6 months or longer (unless death intervenes) and requiring care by pediatric subspecialists and often a period of hospital care.”
Even with these cases, it can be difficult to predict death, the panel indicated. Some children have either a fluctuating decline or a long period when their health is fragile, making the prediction of death “exceedingly imprecise.”
Although pediatric deaths still most commonly occur in a hospital, the proportion of pediatric deaths attributed to complex chronic conditions that occur at home has risen considerably, the report said. This trend points to the need for community-based capacity for home care and bereavement services for families.
The most important research need, the IOM report said, may be in symptom management and for a toolkit for palliative care for many kinds of conditions in children whether they are close to death or not. “Unfortunately, research regarding pediatric symptom management is woefully lacking,” it indicated.
The report does note that among recent developments, the Affordable Care Act eliminated the requirement to choose between curative or hospice care when it is paid for under Medicaid or the state Children’s Health Insurance Programs.
The report, Dying in America: Improving Quality and Honoring Individual Preferences Near the End of Life, is available to download for free from the IOM.
Ms Foxhall is a freelance writer in the Washington, DC, area. She has nothing to disclose in regard to affiliations with or financial interests in any organizations that might have an interest in any part of this article.